I met with a surgeon Wednesday and then a plastic surgeon. I am awaiting genetic test results that I hope to have by 12/24 and will make my treatment decision easier as if I have a genetic predisposition I will get a double mastectomy with immediate reconstruction. The struggle I have is in the options without the genetics. 

My maternal grandmother had BC in 1946 at the age of 41 so of course I have no idea what that was but she lived to be 96 and very healthy.

My mother had DCIS stage 0 at 70 (five years ago) and had lumpectomy and radiation and is doing fine but that's a very different cancer.

My husband passed away from anal cancer 18 months ago and while I recognize that area of radiation would have very different issues it had negative outcomes. I worry about having radiation right over my heart. I am a marathon swimming so all treatment options concern me with my ability to swim for hours (although read about Sarah Thomas a TNBC patient who recently broke the world record by swimming across the English Channel 4 times after treatment and reconstruction).

So, if I don't have the genetics that indicate I am at more risk do I still get a double mastectomy and reconstruction? I've read many articles and papers someone posted on this topic and it really has me waffling on the decision I thought I would make either way. I was going to meet with a radiologist to ask some questions but cancelled that for a multitude of reason, the least of which being that my mother went to her and the DR (although very good at what she does) appears to be on the spectrum and wasn't able to give my mother the information she needed to make a decision so she had to go elsewhere for a second opinion. I do have the name of another radiologist but if I don't have the genes I don't need to talk to a radiologist (I also would not have had the results when the original appointment was scheduled).

I hope I'm not all over the map here. My brain sure is. Any insight with these options. How much time would I be out of commission with a double mastectomy and reconstruction. I work remotely and my day job is easy to take time off but I also teach college courses at night and can't determine if I would be able to do that this spring or not. 

Thanks for reading and any insight would be very helpful. 

Terri

I had tx 20 years ago. I didn't have genetic testing until 2 years later. It wasn't offered beforehand at that point. I was 45 years old. My mother had just passed at age 64 from ovarian cancer. I had basic genetic testing and it was negative. I had extensive genetic testing thru the King study in maybe 2010. It was negative for everything. My sister ended up being dx with er+ breast cancer in 2012. No one else in my extended family had ever been dx with either breast or ovarian cancer. 

I am a runner. Not far, but do run daily, 2-5 miles. At the time also, Dr's couldn't give advice as to what the effects would be for running or working out. I am missing the bottom part of my lung due to radiation. Dr said it was inconsequential. I was able to run after chemo but stopped towards the end of radiation to resume once it was over. 

My run partner was dx 2 years ago with stage 2 her2 so endured quite a bit more of treatment. Certainly far more than I had.[ my tx was much less than what is given today for TN]

 She chose lumpectomy for the convenience of recovery. Her first dr had suggested mastectomy but she felt like he chose that more for his convenience. She ran all thru tx except for the 3-5 days of chemo. 

I was still raising children so didn't have energy to run when I went thru chemo. My run partner, in her mid 50's at dx, was finished raising kids so perhaps had more energy. 

Your cancer is still very small. 

I believe Donna 123 answered someone else's question within the last few months about the outcome difference between mastectomy and lumpectomy. I am sure someone with more technical knowledge will weigh in. 

Both my run partner and myself worked all thru tx. 

I don't know if this answered any of your questions. I hope it helps. 

I know everyone will come up with a different decision and it does help to read others experiences and thought process. I believe if I test positive I will have a double mastectomy with immediate reconstruction. It's the decisions I'd make if I don't have the gene that I'm stuck on. If I was sure I'd make the same decision either way I could schedule surgery now and not wait to get results then decide. 

Your comments about your lung are scary! This tumor, although very small, is right over my heart so that freaks me out. I have an appointment with a radiologist but not until 1/7. If she isn't able to help my concerns about my heart then I'd go with more drastic surgery and really sooner is better if I need to take all this recovery time. 

My surgeon feels waiting for those results is a good idea too. It was reading some of the materials posted here about radiation and lumpectomy having some better results that had me questioning things more.

Thanks for your feedback.

Terri

my cancer was also right over my heart.  And I have several fairly serious heart issues. Mitral valvue prolapse, atrial fib and atrial flutter.  Im on two different heart meds.I had a lumpectomy only.  This was over 10 years ago and I know things have changed.  But I had 2 months every day of radiation.  They were very careful with the radiation.  But the doctor would not allow me to have the red devil part of the chemo.  I have forgotten what it is called.  It used to be one of three chemos they used.  

Steve

I had about the same size tumor and right over my heart as well.  I went back and forth on mastectomy's versus lumpectomy.  I decided on the lumpectomy with radiation.  I did have the genetic testing after my lumpectomy figuring I can always go back in and have the double mastectomy if needed.  The testing came out negative.  I am four years out from diagnosis and just saw my medical oncologist for my annual check up.  All clear.  

I am glad I took the conservative approach.  I am an athlete as well and worried about the radiation directly over my heart muscle.  They are very very careful on the beam that shoots across the breast on the left side.  They have very strict protocol on breathing and hold techniques to make sure the RAD strike is accurate.  I have had no issues since my treatment ended. 

I read your post and know your mind is spinning right now.  There are a lot of decisions to make but know you don't have to rush to make them.  I felt panicked that I had to "hurry through every decision".  You don't.  

Find your team that you trust and work through the process.  For me, once I began treatment, I relaxed a bit knowing I was walking down the path.  Day by day.  This forum kept me really balanced.  I check this site every week to offer encouragement or just read about other survivors and how they are all doing.  We are all in this together. 

Here's hoping you get the answers you need this week so you can take your first step.  We are all here for you.  I like the saying "Let your Faith be stronger than your fear".  

Penny  

Hi Terri,

Hope you get your genetic test results this week so it will help you make your surgery decision.  Without the genetic factor, many times it comes down to a personal choice.  I know you are concerned about radiation.  I had a bilateral mastectomy 11 years ago with implants placed under the pectoral muscle.  I don't know if this is still the reconstruction practice or if the plastic surgeon has other options.  I still don't care for the feel of the implants under the muscle when you stretch or try to exercise.  I used to be able to throw a softball very far.  Since surgery, the strength in my arms are not the same.  I exercise and lift weights but don't have the same strength, range of motion as before surgery.  I'd ask your surgeon how mastectomy surgery will affect your swimming vs lumpectomy/radiation.

Donna

YUP, brain is spinning.

Thanks for your insight and feedback.

Terri

Alternatively you can write to me at contact@sagepatientadvocates.info 

Good luck with everything. We are all rooting for you.

warmly,

Steve

Hi Terri,

So glad you are getting another opinion at Dana Farber.  It's always a good idea to get a couple of opinions from different facilities, especially if one is part of the NCCN network. 

There is a grey area for chemo when the tumor is very small.  Usually the cutoff is 0.5 cm or less and based on risk criteria.  Please take a look at page 54, Guide #11 of the NCCN Guidelines for patients.  In fact, you may want to read through the entire document as it is very informative for newly diagnosed patients.

https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf" rel="nofollow - https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf

Donna

Thank you for being you,

Steve

I am so happy to see you r still on this site helping people. You Steve and a few others were so helpful when my daughter started on her TNBC journey. You helped her in 2009-2010.

Thank you again!

warmly,

Steve

Hi Bonnie,

So good to hear from you!  Hope you and Heather are doing well.

Hugs,

Donna

It's a long story but it may help you and others here to read it so I will share with you.

The story starts when my daughter was 25 years old. I was worried about all the cancer in my family on my maternal side-

My grandmother diagnosed at age 47 with ovarian cancer

Her daughter (my mom) diagnosed with breast cancer at age 41
Her second daughter (my aunt) diagnosed with breast cancer at age 36
My aunt's youngest daughter diagnosed with cancer of the pancreas at age 39

I spoke to a Breast Surgical Oncologist and told him that I was worried about having a mutation that might have pre-disposed my relatives to getting various cancers.And most importantly, I was concerned for my daughters then aged 25 and 14.
His response was "Steve, there is no reason for you to worry. Any mutation would be passed from mother to daughter. You don't have ovaries do you? Forget about it." 

Unfortunately, I believed him. His ignorance was probably because he never studied genetic mutations in medical school. 

I shared the advice I had received with my daughter and told her I was very relieved and that she did not have to worry. I still feel bad about not seeking another opinion from another physician. My daughter spent the next 11 years doing zero surveillance instead of getting tested for a genetic mutation and doing surveillance as she should have.

Topping off the poor advice was the advice my daughter received from a major cancer center in NYC after she was diagnosed with TNBC. She was told to get a lumpectomy and the Breast Surgical Oncologist did not mention genetic testing or the option of getting genetically tested.

During my daughter's lumpectomy procedure the surgeon found more cancer and the surgery became a quadrantectomy which was a more extensive procedure in which the left quadrant below the nipple was removed. 

After her procedure I spoke to another oncologist friend and told him about my experience with the Breast Surgical Oncologist and he said "Steve, you got very poor advice. Your daughter, based on your family history, probably has the BRCA mutation and she probably inherited the mutation from you. This is Genetics 101; Mendel and the peas. The mutation can 'go' from mother to daughter but can also go from mother to son and from son to daughter or from son to son. Your daughter should get tested for the mutation and if she has it she should have a BMX. And you are the carrler; your other children (I am the father of six, 4 boys and 2 girls) test for the mutation especially your younger daughter.

And my daughter tested and she was positive for the BRCA mutation and I tested and I was positive, too. I went back to the Breast Surgical Oncologist and slid my Myriad report across the desk to him. He looked at it and said nothing but turned beet red. After a very long minute or two he still had not said anything. I said "because of your poor advice my daughter did not do surveillance and now she has TNBC." Now he has turned scarlet but still has not spoken. I told him, "I am leaving you a copy of my genetic testing report and I hope you never tell another man that he cannot carry this mutation because he doesn't have ovaries." He nodded in silence and and with that, I left. What was missing, of course, was an apology.

My daughter, after her first surgery, went with me, to her Breast Surgical Oncologist and told her she had tested BRCA+ and that I had told her that the gold standard for women with BRCA mutations was to consider having bi-lateral mastectomies. And the surgeon said "of course I will do that for you." Missing, again, was why she never mentioned BRCA to my daughter to begin with. 

I found out later that this particular surgeon had never referred any of her patients for genetic testing because she was a 'breast conservationist' and didn't believe in 
mastectomies. I think she should have suggested testing for my daughter and if a positive result at least told her about a BMX as an option and also discuss the possibility of gynecologic surgery at some point. She should have given her options not just her personal views.

Having said all of all of the above, I am not recommending that anyone here with TNBC should have a BMX but I do recommend that women get genetically tested for a deleterious gene mutation such as BRCA (there are many other mutations that have been identified in the last 18 years) and discuss the consequences of that with a Certified Genetic Counselor, a Breast Surgical Oncologist and a Breast Medical Oncologist and then decide what to do based on recommendations from their medical team. 

joyjiang, I do think it is a good idea for your daughter to get genetically tested but I will not give you or her any medical advice. I hope she tests negative for any deleterious mutation if she decides to test. 

The chance for a recurrence or a new primary in the contralateral breast is substantial for a woman with the BRCA mutation so many women opt for risk-reducing surgeries but
some don't. It is a decision to be made with advice from your medical team and some women also seek second opinions. Also, for some unknown reason to researchers, it is my understanding about 70% of the time when you have breast cancer and carry the BRCA mutation your type of breast cancer is TNBC. The converse is not true. If you have TNBC you do not have a 70% chance of inheriting the BRCA mutation.

I hope I have answered your question. Sorry my response was so long but the one thing for sure about me is that I would benefit from having a good editor in my life. 

If you want to view some other aspects of my family's BRCA story you can go to

www.sagepatientadvocates.org and click on the BRCA video. I think it was filmed 10 years ago by Genetic Alliance and used as a tool for physicians to make them aware that men could carry a gene that causes breast and ovarian cancer. Sadly, I have been informed recently, that some doctors still are not aware. 

with my love to all here,

Steve

  Thank you for sharing your story. I am sorry that you and your daughter had to go through this experience. I will keep her in my prayers.

  Your story demonstrates how important it is for people to be knowledgable about their condition and to keep up to date with the latest findings. We are our biggest advocates. Do not hesitate to ask your provider questions and if not satisfied with the response request a second opinion. 

   I hope by sharing your story others will be helped. 

Sincerely,

Diane

DX IDC, TNBC 8/2021 (age 65), Stage IIa Grade low, 2.2cm, 0/0 nodes, Lumpectomy & node dissection 8/18/2021, BRCA1&2 negative  Chemo AC every 3 weeks for 12 weeks, completed 11/30/2021, Taxol once a week for twelve weeks, will finish March 10. Then radiation 5 times a week for 4 weeks. 

BMX of course prevented cancer coming back in breasts. I would suggest you check whether chemo would prevent distant metastasis. 

With BRCA 2, you need to find out the risk for ovarian cancer, if necessary take out ovaries preemptively. Ovarian cancer is often found late (Stage 3 /4) with bad prognosis. 

  I hope this informations is helpful. I wish you all the best .  Diane

 

What is your current treatment? We almost have similar stories but I had a lumpectomy. So in 2018(stage 3 TNBC) I had chemo, then a lumpectomy in 2019, then radiation, then took Xeloda. I had a reoccurence as of TNBC 3/2022 opposite side in lymph nodes & chest wall. 

I'm sorry you are dealing with this  beast again! What treatment are you on? Is it still considered a loco-regional recurrence?

Welcome to our forum that is populated by some very wonderful, supportive people.